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Medical Forum / Diseases and Disorders / Alzheimer's / March 2004

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turkey in the straw - 22 Mar 2004 05:21 GMT
Please let me apologize for my rude behavior.I just have so much on my
plate and i get frustrated at times.Trying to sell this place ,my son
was in jail,this house is so darn small,etc.,etc.'etc.
  I was wondering what you do when a LO forgets how to swallow?TY,Barb
Darryl - 22 Mar 2004 06:05 GMT
>   I was wondering what you do when a LO forgets how to swallow?TY,Barb

In my families experience, we braced ourselves and let nature take its
course with minimal medical intervention.  :-(

Darryl.
Jennie - 22 Mar 2004 07:51 GMT
Barb,

As we all have days like that (and caring for a LO with Alz tends to make
them more frequent), we can all sympathize with you.  You seem to have more
on your plate than any human being should be required to handle.  (Trying to
sell a home has induced many a case of temporary insanity just by itself!)

Your question about swallowing is one I have been thinking about more and
more, because my mother is not there yet, but at the rate things are going,
it might happen sooner than we think.

When you think about a new-born baby, two of the reflexes it is born with
are breathing and sucking.  I wonder if, once swallowing becomes difficult,
whether it would be easier for Alz patients to suck down their food in the
form of liquid.

I'd be interested in any advice, experiences, etc from those who have gotten
to the stage where their LO lost the ability to swallow.  I have seen
feeding tubes discussed here before; my mother has a living will that says
she doesn't want any artificial means used to prolong her life, so I know we
are not going that route.  But, we'd of course like to keep her consuming
her food by one means or another for as long as possible.

-Jennie

> Please let me apologize for my rude behavior.I just have so much on my
> plate and i get frustrated at times.Trying to sell this place ,my son
> was in jail,this house is so darn small,etc.,etc.'etc.
>    I was wondering what you do when a LO forgets how to swallow?TY,Barb
Darryl - 22 Mar 2004 13:50 GMT
>When you think about a new-born baby, two of the reflexes it is born with
>are breathing and sucking.  I wonder if, once swallowing becomes difficult,
>whether it would be easier for Alz patients to suck down their food in the
>form of liquid.

Liquids will also lead to the inevitable aspiration pneumonia.
Unfortunately no swallow reflex means nothing goes in the mouth.

>I'd be interested in any advice, experiences, etc from those who have gotten
>to the stage where their LO lost the ability to swallow.  I have seen
>feeding tubes discussed here before; my mother has a living will that says
>she doesn't want any artificial means used to prolong her life, so I know we
>are not going that route.  But, we'd of course like to keep her consuming
>her food by one means or another for as long as possible.

Once your Mom has reached the point of having no swallow reflex, you
might think differently.  That is, once my Dad reached this point, we
swtiched to a D5W (5% dextrose [glucose] in water) to keep him
hydrated/comfortable.  No antibiotics (they might be offered based on
hospital protocol) and no naso-gastric feeding tube.  At this point,
the latter two treatments *might* prolong the inevitable.

In your Mom's case, a ng-tube would be considered an artificial means
used to prolong her life.

Darryl.
Mary Gordon - 22 Mar 2004 17:43 GMT
What generally happens is that the person takes in less and less food
with time, despite all the coaxing and careful handfeeding you may
try. My MIL essentially stopped eating about 6 weeks before her death
- she just wasn't interested at all - she'd push your hand away, or
turn her head, or just not open her mouth, or let it fall out. She was
sleeping more and more. Everyone tried many times a day right up to
the end, but clearly, the tide was going out, and she was just
shutting down. She also took in less and less fluids with time.

She did not seem to be suffering or in distress at all - just sort of
drifting away. I don't know if their brains are so damaged that they
don't feel hunger or thirst, but we couldn't get her to take anything
in - and I don't know what the point of forcing the issue with tubes
and IVs would have been (never mind that the evidence shows that
neither approach really does anything to turn the tide - when they
start to go, intervening just makes the whole thing take longer, which
is agony on everyone.

She was bedridden within a very short time (she'd slump forward if you
tried to sit her up), so she spent her days propped in bed, almost in
a comatose state. I think its much more distressing for the caregivers
- you feel like you should be DOING something, and the idea of letting
them essentially starve to death is upsetting - but really, there is
nothing to be done other than to make sure they are very comfortable,
in no pain, and hold their hand. We had glycerine wipes to keep her
mouth moist. In our culture, its very hard just to do nothing but wait
and love them and let the inevitable unfold.

Her death was very gentle and peaceful - my husband was there (her
only child).
The nursing ward had regular care conferences, and the staff there and
her doctor were 100% in support of letting nature take its course - no
one suggested we do anything aggressive to keep her going (and of
course, she had a DNR order, so no one messed with her in those final
moments).

It was so right, and we don't regret any actions taken in her final
days.

Mary G.
Dennis P. Harris - 22 Mar 2004 10:19 GMT
On Sun, 21 Mar 2004 22:21:44 -0600 (CST) in
alt.support.alzheimers, barbfrombethel@webtv.net (turkey in the
straw) wrote:

> I was wondering what you do when a LO forgets how to swallow?

You need to face the fact that she's not going to live much
longer once she can no longer swallow liquids.

Call Hospice.  Tell them that she's starting to have trouble
swallowing, and that you need to set up terminal care to keep her
as comfortable as possible.  They may want to set up an IV, not
for nourishment, but to keep her hydrated so that she wont'
suffer more discomfort from dehydration.

What were her final care instructions, if she left any?  Did she
have a Living Will?  If so, you will need to follow her
instructions.
Des - 22 Mar 2004 16:22 GMT
>On Sun, 21 Mar 2004 22:21:44 -0600 (CST) in
>alt.support.alzheimers, barbfrombethel@webtv.net (turkey in the
[quoted text clipped - 4 lines]
>You need to face the fact that she's not going to live much
>longer once she can no longer swallow liquids.

So true.  My mother only lived three days after that.

>Call Hospice.  Tell them that she's starting to have trouble
>swallowing, and that you need to set up terminal care to keep her
>as comfortable as possible.  They may want to set up an IV, not
>for nourishment, but to keep her hydrated so that she wont'
>suffer more discomfort from dehydration.

My mom just passed away on Wednesday.  We had her at home, and hospice
was very helpful.  They tell you that dehydration is a mild sedative
so advise against IVs.  They set me up with morphine, lorazepam and
ativan.  (They gave mom some drugs, too.)

Heh.

Sorry, I can't help it.  I'm crying and laughing all at the strangest
times.

It was so very sad to watch her lose her memories and understanding of
things, but now it's over (much more quickly than I ever expected) and
I'm glad I was able to find help and have her at home so we could be
with her.  She never forgot what love and tenderness was about.

~Des
Songbird - 22 Mar 2004 18:22 GMT
> My mom just passed away on Wednesday.  <snip>  She never forgot what love
and tenderness was about.

that last sentence says it all, Des, and I hope that is a comfort you will
cling to in the sad times you are now in. She was blessed to have a family
that would love her through that last transition.

May the memories of happier days be a consolation to you now. You are in my
thoughts and prayers.

Songbird
Des - 25 Mar 2004 07:26 GMT
>that last sentence says it all, Des, and I hope that is a comfort you will
>cling to in the sad times you are now in. She was blessed to have a family
>that would love her through that last transition.

Thank you, Songbird.

>May the memories of happier days be a consolation to you now. You are in my
>thoughts and prayers.

I'm still very sad right now.  Maybe people told me before to be
grateful that I still had my mother around, but you never really know
what it's like until you lose someone.

~Des
Gwen Love - 22 Mar 2004 22:09 GMT
Des, my sympathy on the loss of your mom.  Keep those good memories and let
them console you.
Gwen

Signature

=========================================
You cannot truly listen to anyone and do anything else at the same time.
M. Scott Peck
Psychiatrist and writer
============================================================

| >On Sun, 21 Mar 2004 22:21:44 -0600 (CST) in
| >alt.support.alzheimers, barbfrombethel@webtv.net (turkey in the
[quoted text clipped - 29 lines]
|
| ~Des
Des - 25 Mar 2004 07:29 GMT
>Des, my sympathy on the loss of your mom.  Keep those good memories and let
>them console you.
>Gwen

Thank you, Gwen.  And thanks for the helpful and supportive posts
you've made to the group.

~Des
Mare - 23 Mar 2004 20:35 GMT
Des,
I'm very sorry for your loss.
Mare
Des - 25 Mar 2004 07:34 GMT
>Des,
>I'm very sorry for your loss.

Thanks.  You know, I'm a little bit surprised how much it's helped
over the past week to have people express their sympathy.  I find I'm
so grateful for the support of other people, even if it's just a card
or a phone call.  I very much appreciated the church ladies who all
pitched in to help me with the traditional Greek funeral rituals, and
meal.

And now I know why they always serve that good Greek brandy as soon as
the funeral's over, whew.

~Des
Mary Gordon - 22 Mar 2004 16:55 GMT
Has she actually forgotten how to swallow, or is she just having
difficulties dealing with chewing and mixed textures? Is she already
on a soft diet and drinking thickened liquids?

Can you describe whats going on?

Mary G.
Mare - 23 Mar 2004 20:35 GMT
Hi Barb,
When my Mom started having trouble swallowing I asked for a
speech therapist to do an evaluation to see what she was having
trouble with. She has been eating pureed food for over a year
now. She doesn't have trouble with liquids yet. I did start her
on a "sippy cup" with a straw about 5 years ago in anticipation
of problems with liquids. That seems to let her control her
intake without me forcing it. Lots of folks do have trouble with
thin liquids and use thick it to thicken the drinks. Thickit can
be mixed in different consistencies that the speech therapist
recommends. All they do is watch her swallow different
foods/liquids and can recommend from there. I also took her false
teeth out since the food was just getting stuck and making her do
that incessant chewing thing since she could feel food in her
mouth. I will not force food on her but she still wants to eat so
I will continue to feed her whatever she wants.
Signature

Mare
mfcoleman@THEOLEmindspring.com
http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm
alt.support.alzheimers' FAQs and Stuff Pages

> Please let me apologize for my rude behavior.I just have so much on my
> plate and i get frustrated at times.Trying to sell this place ,my son
> was in jail,this house is so darn small,etc.,etc.'etc.
>    I was wondering what you do when a LO forgets how to swallow?TY,Barb
 
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